The definition of rare
Posted , 7 users are following.
Definition of rare:
- unusually good or remarkable
- Not found in large numbers and consequently of interest or value
- (event, situation, or condition) not occurring very often
In my situation (and many of you as well) having this "rare" condition works against us in so many ways.
It's so rare the average person usually won't know what it is or that it even exist.
And when you explain it they don't really understand. In general I get asked if its fatal.
since it isn't they'll say .... oh so you're going to be okay.
Yeah I'm not going to die so EVERYTHING IS GOING TO BE GREAT!!!!! 😕
And since it doesn't kill you it seems like there's no big hurry to truly research this God awful condition and find solid solutions/cure.
In my opinion if 7 out of 10 people suffered from TN worldwide we would be researching solutions/cures non-stop.😝
Maybe it's not fatal but it sure can suck the life out of you. I've been dealing with this for the past couple of years.... I thought I had a combination of lockjaw, TMJ & wisdom tooth pain. Then the mother of all attacks hit me in June of this year and I was finally diagnosed with TN I & TN II.... lucky me eh?
I'm usually a very positive person I've always looked for the silver lining in the clouds, glass half full type person. But I'm a single mom... the sole breadwinner... the Matriarch of my little family and now I'm afflicted with this rare condition and it is destabilizing everything I work so hard to keep together. 😒
My pain has been non-stop since early June.
Since I have both type I and II finding the right meds is a challenge but it's only been a couple of months and I know it can take time to find the right combo. The past 5 days have been horrible but I've had much worse. My job is being severely affected ... to the point that I fear I may lose it. My memory is terrible, my brain seems slow....I'm exhausted ALL the time even when I wake up. It hurts to talk ...eat ...drink ...brush teeth ...you know the drill. 😳
Sorry so winded I just really needed to vent. Though I've read so many stories here that have really helped me. 😃
You guys are inspirational because even though you're dealing with this nightmare condition you still take the time out of your life to help others with your kind words and advice. 😊
My mom lives 17 hours....1,095 miles away and I don't have any other close family members. I don't have any real friends only acquaintances and for the first time in my life I feel truly alone and this condition just makes me feel even more isolated especially when I can't speak. Feels like I've taken a a vow of silence 😆.
On a positive note I am so grateful for my chlidren & my furr-babies (2 cats 1 dog) who have been by my side rooting for me to get a grip on this thing.(they think I'm superwoman hahaha). For them I must stay positive, brave and committed to find a doctor that will truly wants to help me with this condition... even if its a RARE thing..... that's not fatal.😜
1 like, 16 replies
guadalupe43996 Shayla1127
Posted
Hi! Shayla i know what you mean. My episodes last up to 8months and keep getting stronger i take carbamazepine and bacoflen combined but doesn't help and i hate feeling out of it that's all it does i started numbing my mouth Neurologist gave me liquid lidocaine it at least gives me a few minutes cause it doesn't numb for long . I have three kids and I'm very happy they are at the age where i can write them when I can't talk . I have been dealing with this for about 5 1/2 yrs. now and yes they look at you like nothing is wrong when in reality you want to get inside a bubble and scream from the pain . I started making myself drink Ensure milk since i can't eat bu we know its hard . I does take so much from you tho . Hope your pain eases im on week 3 with mine .
Shayla1127 guadalupe43996
Posted
Good morning,
I'm heading to work so I have to keep it short but thank you so much for your reply and understanding it's good to be heard AND understood. Guess it takes one to know one lol.
I pray your pain gets better soon...sending positive healing vibes your way!
Shayla1127 guadalupe43996
Posted
Hope you've been well Guadalupe.
I have purchased those Ensures you suggested. it kind of feels like I'm on slimfast. Thanks again for your kind words and thoughts.
Shayla1127 guadalupe43996
Posted
Thank You Susan, I really appreciate your kind words of encouragement. It never seems to amaze me that so many people are dealing with this condition. Before I was diagnosed I'd never heard of it and I've worked in the medical field almost 20 years. This is a journey I never wanted to be on but here I am and I can't afford to give up...so here I go..... lol 😆. Nevertheless, I know I'm not on this journey alone. there are a group of warriors on this journey with me.... & despite everything there a great bunch of people and I'm glad too be apart of that. 😃
gill32586 Shayla1127
Posted
You are a superwoman !!! We all are! We just keep going and hoping, hoping , hoping that somewhere , somehow, someone will find an answer. Some of us find some relief , albeit short lived by remission for a period of time but we're always waiting for the next bout to floor us again. Only the 'rare ' ones with this condition understand What it's. like to live with. We don't need sympathy...just understanding . But you WILL keep going and you WILL survive this. Try everything until you find the medication that gives you the best result ( Carbamazapine - Tegretol ) is still the best for me after 20 years, My dosage is quite high but it is having an effect and at the moment I've had months of remission Consider the various surgical procedures, some of which involve only hospital day care. Trigeminal Coagulation can be repeated if it helps and can give relief for several months. So all is not lost. Keep trying.
There will be a better time for you so try to remember that it will pass and make the best of the better times. It's quite possible the you will have long remissions. I know that we all fall into depression when we're in the throes of a bad attack, but live day by day and remember that tomorrow it may start to be better. My love and prayers to you ,sweetheart.
Gill
Shayla1127 gill32586
Posted
Super encouraging and powerful message, thank you. I am an introvert who sometimes comes off as an extrovert. I was scared to post on here and open up to total strangers but even if I only received one reply like yours it was worth it. So sorry you've been dealing with this for 20 years. it breaks my heart. I wouldn't wish this on my worst enemy.
gill32586 Shayla1127
Posted
You're a brave woman. Stay with this site. We all open up to our kindred spirits and it can offer a little comfort knowing that there are so many that feel exactly like you. Sometimes you will find discouraging posts but do remember that, like you, we all tend to post at our worse times but we can tend to forget the site when things are better. It's human nature and a cry for help but can give a distorted view.
I hope you have a good neurologist. You should have been offered several medical surgeries as well as medication especially as you're a working mother. Go back. Keep pressing. Love to you, Gill
Shayla1127 gill32586
Posted
Hi Gill! I hope you're doing well. I've been coping its been a rough week but I've had worse. I'm trying to stay focused on the positive and to keep mindful that things could always be worse.
It usually only hurts when I do anything with my mouth and certain facial movements and certain body movements 😆. Who am I kidding??? My pain is nearly constant. But if I stay very, very still...like a statue and breathe very, very slowly I'm okay lol. Well I hope you and everyone else has a nice day, stay blessed!
gill32586 Shayla1127
Posted
Hi Shayla. Yes all of that too. I can't pronounce the letter 'P' without getting a shock and saying certain words always does the same. Cleaning teeth, eating, smiling, make- up and more. I find that doing anything with my face looking downwards is worse, so try not to talk and any other facial movement in this position. Particularly eating. Try to keep you head upright and looking forward. Takes practice and can be easily forgotten but it helps a bit. Don't turn around suddenly. Don't forget that tomorrow could be the start of a remission. Best wishes to you, my love. Stay positive
Shayla1127 gill32586
Posted
Hi Gill,
I've been practicing keeping my head up and away from the affected side when I eat. It actually does help some. It's crazy everything you're willing to try just to get some relief or avoid an attack. But this is my life now and I realize that I'm finally starting to accept it... and somehow I've found a weird kind of solace in that. Well thanks again for your words of advice and for touching my heart with your sympathy despite having your own crosses to bear. 😊 Stay positive and stay blessed my friend.... sending love and healing vibes your way and to all our fellow TN warriors. 😃
gill32586 Shayla1127
Posted
Hi Shayla, Oh is so kind of you to send me those good wishes. To carry through those suggestions, I thought you might be interested in the fact that Leeds University , quite near where I live, were doing a project on posture and it's effect on T.N. and promised to send results to me. So far I've heard nothing but I'm convinced that there is something in this. At 76, I still have the silly habit of sitting on the floor to watch T.V. If I then turn my head and speak to someone I invariably get a facial shock. I have also mastered the art of eating and cleaning my teeth looking forward , not downwards. It's not foolproof but every little helps. Never loose heart. Two years ago my neurologist agreed to perform my 4th Trigeminal thermocoagulation. Previous ones have had variable results but this one has given me almost two years of comparative freedom from pain. I seem to be coming out of that remission now but I'm so grateful for the normal life I've been able to enjoy. The procedure is performed in day surgery , so it' s well worth asking your chap about it. I do hope you soon feel much better. Keep in touch to let us know how you are. Love and prayers, Gill
sheilagh46696 Shayla1127
Posted
So sorry to hear of your pain. I have recently had the tooth and ear T.Neuralgia and have only had respite of a few weeks at a time this year. I have just resorted to taking Cannabis Oil out of desperation. It is pure hemp extract and i have taken 2 drops morning and night for the past week and can honestly stay I finally have some relief. I will stop once I'm convinced the T.N has gone. I have NEVER used cannabis in any shape or form and consider myself to be well informed. if you are interested just Google nerve pain cures. i hope you get some relief soon.
gill32586 sheilagh46696
Posted
Hi there, It's interesting that you should write on this subject because it's something I have always considered when in the throes of an attack but never taken the plunge. I suppose I'm afraid of not getting the right stuff and having a bad experience. I've tried to ascertain whether or not it's legal in the U.K. but it's just about as clear as mud. We all resort to desperate measures at desperate times and you sound like a very sensible person. I hope you get lasting relief and I wish you the very best. I will pray for you as I do for all fellow sufferers. Gill
Shayla1127 sheilagh46696
Posted
Thanks for the tip and I will definitely do my research. I call this condition the roller coaster ride from hell because once your on the ride it's like you can't ever get off of it.
I think it's great that your thinking outside of the box and I too pray you find relief soon.
r._f._09034 Shayla1127
Posted
Aweeeee Shayla...i can feel the pain and frustration in the your message here. I'm so sorry girl and i'm really glad you came here to vent. Do it anytime and often if need be. You've earned it...we ALL have with this cursed illness that even doctors are clueless at times to help. I absolutely agree, there is NOT enough work, time, money and research and here we have this whole block of people suffering EVERY day! I mean with everything else they research...why not this illness? At the very least, the CDC should be making sure the medical community KNOWS what they are dealing with. I've personally had over 200 outbreaks of shingles past 8 years and even hospitalized many times and left with Trigeminal Neuralgia, but yet after ALL this, i actually had an on-call physician say to me not long ago that he didnt realize you could get shingles in your 40's. I mean REALLY!???
I thought to myself, "Has this guy been living under a rock? Geesh!
Anywayyyyyy....i haven't been on here for a while because being down for extended period but i ran across your message here and wanted to let you know that you are heard. We hear you loud and clear friend and agree completely. I hope you get to feeling better soon girl. You take care and know that you are NEVER alone. Hugs to you.
~Rhonda